The Long Hold Support Group

[[Su...]]

Heath , So glad you're starting to feel better , getting sick on top of Wd is no fun !

 

Nova, - you poo r baby , all this rubbish you're having to deal with... I pray it gets sorted out soon and you can relax into your process of tapering and healing , however you need to do it.

 

I'm hanging in there , still quite symptomatic , but at least not horrific. trying not to think about the future and how long this might take ... .like the rest of my life and some! 

Still really waiting for my BIG break , the one that will allow me to taper off for real.... and have a life as I go.

 

love to everyone , Keep going warriors!

MiYu  :smitten:

 

anyone hear from ATU and how he's doing ? TNTD hasn't been around for a very long time either.....maybe she's just taking a break.

 

Hi Miyu,

So glad to hear that things are going in the right direction and that you are getting some relief.  I've been wondering about ATU and TNTD as well.

Hoping that science means that things are going fairly well?!

SS

[[Al...]]

SufferingSixty,

 

I’m still around,...don’t post much these days. Had a tough time when my Dad passed away in mid Jan. I just held,. Well actually I made a small cut but did not post it. Now holding.

I’m doing OK. Sleep is lousy and I get the those chest tightness muscle pains regularly but all in all I’m doing OK.

 

Lots of meditation and “ Me Time” 😘

 

Peace & Healing to everyone.

 

ATU🙏

[[Su...]]

SufferingSixty,

 

I’m still around,...don’t post much these days. Had a tough time when my Dad passed away in mid Jan. I just held,. Well actually I made a small cut but did not post it. Now holding.

I’m doing OK. Sleep is lousy and I get the those chest tightness muscle pains regularly but all in all I’m doing OK.

 

Lots of meditation and “ Me Time” 😘

 

Peace & Healing to everyone.

 

ATU🙏

 

Oh I'm sorry about your Dad.  I'm sure you posted that and folks responded and somehow I missed it all.... or didn't take that into consideration around your being quiet these days....  Yes a time for reflection and meditation when these major transitions happen.

I'm glad to hear that things are going relatively well,  except for the sleep..  Somehow not sleeping makes everything a little "grey around the edges" for me.

Thanks for letting us know what's happening with you!

 

SS

[[Al...]]

SufferingSixty,

 

No, thank you for being so considerate and asking after me. I get quiet like this from time to time.

But the people on here ( like yourself ) are just so wonderful and warm and understanding. I always limp my way back somehow. 

 

ATU🙏

 

 

[[be...]]

Hi ATU, glad to hear from you, I know you have a heavy heart and I know that you had the Flu, I still have lingering problems from a bad cold virus. But much better. Hope that things get better for you soon. Thinking of you.🕊 Peace and Healing for you.

[[He...]]

ATU,

It’s so good to hear from you. I know you lost your dad, and you need not explain why you have not been posting lately.we all understand. Glad you are taking this time that you need to take care of you.

Take care!

  :smitten:

 

Heath

[[La...]]

Just checking in. Hope everyone is doing okay.

 

We are still holding and struggling.  It's been 5 1/2 months and the evening akathisia is finally gone, but we are still struggling with anxiety.  It seems to go up and down and it's hard to know where we are in this. Sometimes we think we are on our way to a settling (we had a few days last week with calmer mornings and afternoons), and then things get worse again--the past few days have been horrible.  I guess we just have to keep holding and hope things settle soon.

 

 

[[no...]]

ATU  I am glad to hear from you but sorry for what your having to deal with on top of withdrawal, and all you can do now is what's best for yourself don't worry about posting we all disappear when we need to form time to time   xxx

 

                                        ----------------------------------------------------------------------------------------------

 

 

Hi everyone  below is the latest of what's happening in the saga of FML, right now  More shit happened on the phone with the surgery this morning as they got everything WRONG, plus the pharmacist messed up last weeks prescription delivery as well, so I had to spend nearly all day Thursday on the phone on and off while the surgery and the pharmacy blamed each other for messing up my prescription which was late. Then I got a phone call form the surgery saying they had put it in as urgent as it was over due, and it would be delivered Friday, Friday came no Diazepam delivery

 

Once again I spent yet another day trying to get it sorted out, but it couldn't be delivered as it was far too late and they don't deliver on weekends and if it hadn't been for that wonderful earth bound angle who not only took my complaint letter to the Doctors for me on Friday but came back Saturday morning and collected it for me it would have been a week over due which meant my dick head Doctor would have refused to give me this weeks one

 

Then this mornings episode, the surgery were trying to say that this weeks one isn't due until Thursday I then had to go over it all AGAIN.......explaining it was LATE, I had to take the missing doses otherwise I would have  bloody seizures after a couple of days CT!!!   And also when I first joined this crap surgery I was LATE from the very first prescription as they insisted I had to wait for a visit from the Doctor, so each prescription is getting later and later. I could barely talk to them this morning but they said their going to sort it out so I get my next prescription tomorrow as I had to do dose catch up( I actually had some spares thank goodness , but  not many, but I had to tell them that other wise its going to look like I can just get off in a day or two???)  Anyway lets waiy and see as thats what they told me last week The Doctor is still refusing to allow me to taper at my own rate and below is what's happening so far

 

 

Thanks, Nova!! 

 

I'm angry to read that your doctor is making you do fast cuts. That's terrible. Can you report him?

 

Still can't get over the doctor trying to taper you off so quickly. What's wrong with him??? Hasn't he read the literature??? I'm so very sorry.  :'(

 

 

Hi Terry  My friend put my complaint letter in for me on Friday, but I'm going to have to wait until tomorrow afternoon at least before I can find out if its going to be enough to change the Doctors decision as he's acting illegally under UK Consent law,  here's  just part of the letter I've written to him regarding the matter......

 

 

 

Consent Law

 

I wish to establish that I do not give my consent, under the 2017 Consent Law to any changes being made in my repeat medication, against my will, regarding being forced to: taper too quickly, or the removal of my diazepam/Valium, or the lowering of the dose while suffering debilitating withdrawal symptoms, or being given higher doses of any of my other prescribed drugs, without my consent.  2017 Consent Law

 

Please note the following:

 

'If an adult has the capacity to make a voluntary and informed decision to consent to or refuse a particular treatment, their decision must be respected. This is still the case even if refusing treatment would result in their death, or the death of their unborn child’ (NHS Direct Wales 2018).

 

'Respect is expressed in consent law; to impose care or treatment on people without respecting their wishes and right to self-determination is not only unethical, but illegal’ (Medical Protection.Org 2018).

 

 

Discontinuing Benzodiazepines

 

When I requested that Dr ------ at least consider tapering me off the diazepam according to the NICE Guidelines, he stated that he was adhering to the Nice Guidelines. However the Nice Guidelines state that:

 

‘Drug withdrawal should be titrated according to the severity of withdrawal symptoms and individual preference’ (NICE Guidelines, 2018).

My concern is that I am currently experiencing disabling and debilitating symptoms including those listed here, all of which are known benzodiazepine withdrawal symptoms and are listed in Professor C. Heather Ashton’s Manual: Benzodiazepines: How They Work and How to Withdraw, on which the BNF and NICE Guidelines are based.

 

 

That's only part of it, pointing out a few things that are wrong and illegal plus below that section in my letter I have a long list of symptoms but have made it clear its no way all of them

 

This list is not exhaustive and I have many more symptoms. However, I have mentioned these here as a reference and justification of my concerns

 

 

 

So I just got to wait and see what happens by tomorrow hopefully, I hope it dosn't drag out longr as hes already cut this weeks prescription down after saying he would begin next week, And the letter has to go to the Surgery Practice Manager not the Doctor directly but he'll be informed by the practice manager anyway

 

 

Love Nova xxx  :smitten:

 

 

I am waiting another day then I'm going to ring the practice manger to see if its being resolved so I can taper as I've requested, but I'm going to make sure I get that prescription tomorrow first first

 

 

Love Nova xxx  :smitten:

[[Su...]]

Nova,

What more can be said than the whole thing sucks...

And you are such a warrior to keep at it with them all and the explaining and explaining and explaining.....

Hope it all gets works out soon

SS

[[no...]]

Nova,

What more can be said than the whole thing sucks...

And you are such a warrior to keep at it with them all and the explaining and explaining and explaining.....

Hope it all gets works out soon

SS

Thanks SS  Its super sucks right now, I want to ring the Doctor up and have a good swear fest at them!!!  But using the phone is agony as well

 

Love Nova xxxx  :smitten:

[[Su...]]

Just checking in. Hope everyone is doing okay.

 

We are still holding and struggling.  It's been 5 1/2 months and the evening akathisia is finally gone, but we are still struggling with anxiety.  It seems to go up and down and it's hard to know where we are in this. Sometimes we think we are on our way to a settling (we had a few days last week with calmer mornings and afternoons), and then things get worse again--the past few days have been horrible.  I guess we just have to keep holding and hope things settle soon.

 

Hi Laura,

It sounds as though the hold is working well, although not for everything.  Having the akathisia gone must be a huge relief, and perhaps knowing that long holds do change the sxs pattern and things can get much better. 

And I am sorry that the last few days have been horrible ....that wave pattern is brutal!

Tahnks for checking in and letting us know how you are doing.

SS

[[La...]]

Just checking in. Hope everyone is doing okay.

 

We are still holding and struggling.  It's been 5 1/2 months and the evening akathisia is finally gone, but we are still struggling with anxiety.  It seems to go up and down and it's hard to know where we are in this. Sometimes we think we are on our way to a settling (we had a few days last week with calmer mornings and afternoons), and then things get worse again--the past few days have been horrible.  I guess we just have to keep holding and hope things settle soon.

 

Hi Laura,

It sounds as though the hold is working well, although not for everything.  Having the akathisia gone must be a huge relief, and perhaps knowing that long holds do change the sxs pattern and things can get much better. 

And I am sorry that the last few days have been horrible ....that wave pattern is brutal!

Tahnks for checking in and letting us know how you are doing.

SS

 

SS- thanks so much for your support. Yes, we are definitely happy that the akathisia is gone (it was awful, but not at the torture level).  But we are definitely struggling with the anxiety.  For us, the akathisia was it it's worst when it started 5 1/2 months ago, but it slowly improved over time.  But the anxiety seems to go up and down. Sometimes we think we are on our way to a settling and then things get worse again.  And the bathroom phobia certainly got worse with the GI changes from the w/d. But that seems to have settled down a bit (thankfully), but the anxiety is still through the roof. We tried Vistaril, but that doesn't seem to help in a reliable way.  Just hoping the time heals asap. Thanks again

[[He...]]

Just checking in. Hope everyone is doing okay.

 

We are still holding and struggling.  It's been 5 1/2 months and the evening akathisia is finally gone, but we are still struggling with anxiety.  It seems to go up and down and it's hard to know where we are in this. Sometimes we think we are on our way to a settling (we had a few days last week with calmer mornings and afternoons), and then things get worse again--the past few days have been horrible.  I guess we just have to keep holding and hope things settle soon.

 

 

Laura,

Please know that what is going on is normal. Healing in the central nervous system is not linear. The fact that things are going back and forth from good to worse and back again is absolutely normal.

Just hang in, keep holding, things will straighten out eventually.

The pattern of windows and waves is never smooth.

Be patient as I know you have been.

Be strong for your sister. You are a wonderful woman! Bless you!

 

Heath :smitten:

 

[[La...]]

Just checking in. Hope everyone is doing okay.

 

We are still holding and struggling.  It's been 5 1/2 months and the evening akathisia is finally gone, but we are still struggling with anxiety.  It seems to go up and down and it's hard to know where we are in this. Sometimes we think we are on our way to a settling (we had a few days last week with calmer mornings and afternoons), and then things get worse again--the past few days have been horrible.  I guess we just have to keep holding and hope things settle soon.

 

 

Laura,

Please know that what is going on is normal. Healing in the central nervous system is not linear. The fact that things are going back and forth from good to worse and back again is absolutely normal.

Just hang in, keep holding, things will straighten out eventually.

The pattern of windows and waves is never smooth.

Be patient as I know you have been.

Be strong for your sister. You are a wonderful woman! Bless you!

 

Heath :smitten:

 

Heath- thanks so much for your thoughts on our situation. It helps to hear that the whole back and forth thing is completely normal, but, oh how I wish it would stop. This bathroom phobia/anxiety is the worst symptom we've had.  Still can't believe that last week, my mother and I actually were thinking we were on our way to having this horrible symptom settle down. Not sure what caused the uptick, but I suppose that can just happen on it's own. Thanks again. We're just trying to survive each day and hoping that one day we will wake up and this won't be so bad.

[[He...]]

Just checking in. Hope everyone is doing okay.

 

We are still holding and struggling.  It's been 5 1/2 months and the evening akathisia is finally gone, but we are still struggling with anxiety.  It seems to go up and down and it's hard to know where we are in this. Sometimes we think we are on our way to a settling (we had a few days last week with calmer mornings and afternoons), and then things get worse again--the past few days have been horrible.  I guess we just have to keep holding and hope things settle soon.

 

 

Laura,

Please know that what is going on is normal. Healing in the central nervous system is not linear. The fact that things are going back and forth from good to worse and back again is absolutely normal.

Just hang in, keep holding, things will straighten out eventually.

The pattern of windows and waves is never smooth.

Be patient as I know you have been.

Be strong for your sister. You are a wonderful woman! Bless you!

 

Heath :smitten:

 

Heath- thanks so much for your thoughts on our situation. It helps to hear that the whole back and forth thing is completely normal, but, oh how I wish it would stop. This bathroom phobia/anxiety is the worst symptom we've had.  Still can't believe that last week, my mother and I actually were thinking we were on our way to having this horrible symptom settle down. Not sure what caused the uptick, but I suppose that can just happen on it's own. Thanks again. We're just trying to survive each day and hoping that one day we will wake up and this won't be so bad.

 

Laura,

I hope you did not think that I was minimizing what you are going through. I can only imagine that it is like a living hell. I feel so badly for you and your mom, and of course your sister.  I do so hope and pray for you all that his will straighten out very soon.

You are in my thoughts and prayers🙏

 

Heath

[[...]]

Glad to hear from you ATU , you must be going through a lot since your Dad passed, but good to know you're still out there and ok.

 

Nova, Hope you got your script ?Hang in there girl No one should have to deal with what you are dealing with on top of wd.

 

Laura, I hope things settle soon for your sister...... a long hold is so hard....especially when things go so up and down. Heath's response is so good and supportive, I know I find holding so difficult, it's the not knowing that is so challenging.

 

I always feels so reassured when I come to this thread, my fears are always eased. I do find myself wondering if I will ever get to a place where I can do a reasonable taper without all the intense symptoms . I've been mostly housebound since last July , pretty fed up with it , even though things have definitely improved since my crossover to mostly K last september , which was so horrible. mY baseline is much better, but not good enough yet to really taper in a way that I don't get hit hard, that's what I'm finding anyway, even at the slowest of rates. My nervous system is still really unstable.

 

You all know my story , and  got so disheartened with the valium setback . the switch back to mostly K was the right thing , but it has added in time for sure.

I appreciate your reminder Heath that the nervous system healing is not linear, thank you !

so , more oodles of patience required....

 

love, Miyu :smitten:

[[He...]]

MiYu,

With all that you go through, you are still here encouraging others. Have heart! You will be better soon. You will see.

Please remind me of something, I remember that you tried to cross over to Valium but found it was making you sick, (right?) so you went back to klonopin,(right?).

 

So please tell me how come you have put 2mg Valium back in to your taper? Why are you not doing a straight klonopin taper? Did I miss something?

 

Heath

[[La...]]

Just checking in. Hope everyone is doing okay.

 

We are still holding and struggling.  It's been 5 1/2 months and the evening akathisia is finally gone, but we are still struggling with anxiety.  It seems to go up and down and it's hard to know where we are in this. Sometimes we think we are on our way to a settling (we had a few days last week with calmer mornings and afternoons), and then things get worse again--the past few days have been horrible.  I guess we just have to keep holding and hope things settle soon.

 

 

Laura,

Please know that what is going on is normal. Healing in the central nervous system is not linear. The fact that things are going back and forth from good to worse and back again is absolutely normal.

Just hang in, keep holding, things will straighten out eventually.

The pattern of windows and waves is never smooth.

Be patient as I know you have been.

Be strong for your sister. You are a wonderful woman! Bless you!

 

Heath :smitten:

 

Heath- thanks so much for your thoughts on our situation. It helps to hear that the whole back and forth thing is completely normal, but, oh how I wish it would stop. This bathroom phobia/anxiety is the worst symptom we've had.  Still can't believe that last week, my mother and I actually were thinking we were on our way to having this horrible symptom settle down. Not sure what caused the uptick, but I suppose that can just happen on it's own. Thanks again. We're just trying to survive each day and hoping that one day we will wake up and this won't be so bad.

 

Laura,

I hope you did not think that I was minimizing what you are going through. I can only imagine that it is like a living hell. I feel so badly for you and your mom, and of course your sister.  I do so hope and pray for you all that his will straighten out very soon.

You are in my thoughts and prayers🙏

 

Heath

 

Heath- Oh, no, not at all did I think you were minimizing what we are going through. It helped to hear that the back and forth is normal and part of the process, because we were really starting to get scared that this anxiety will never go away.  And,  things are beyond hellish right now.  It's horrible to see her so scared and the stress is beyond overwhelming.  And I also worry everyday about my elderly mother and what the stress is doing to her.  We are just in survival mode, focused on getting her through the day.  I think one of the things I hate the most about this whole w/d process (and there's much to hate) is the unpredictability of it all (at least for us).  It just seems like you never know what's around the corner. You can think you are heading for a settling (like we were last week) and then have things suddenly shift. Well, sorry for all the rambling--I just woke up and the coffee hasn't kicked in. And thanks for your thoughts on our situation.

[[La...]]

Glad to hear from you ATU , you must be going through a lot since your Dad passed, but good to know you're still out there and ok.

 

Nova, Hope you got your script ?Hang in there girl No one should have to deal with what you are dealing with on top of wd.

 

Laura, I hope things settle soon for your sister...... a long hold is so hard....especially when things go so up and down. Heath's response is so good and supportive, I know I find holding so difficult, it's the not knowing that is so challenging.

 

I always feels so reassured when I come to this thread, my fears are always eased. I do find myself wondering if I will ever get to a place where I can do a reasonable taper without all the intense symptoms . I've been mostly housebound since last July , pretty fed up with it , even though things have definitely improved since my crossover to mostly K last september , which was so horrible. mY baseline is much better, but not good enough yet to really taper in a way that I don't get hit hard, that's what I'm finding anyway, even at the slowest of rates. My nervous system is still really unstable.

 

You all know my story , and  got so disheartened with the valium setback . the switch back to mostly K was the right thing , but it has added in time for sure.

I appreciate your reminder Heath that the nervous system healing is not linear, thank you !

so , more oodles of patience required....

 

love, Miyu :smitten:

 

MiYu- Thanks so much for your support.  And, yes, having the anxiety go up and down has been difficult. It's just so frustrating to have a set-back and have things get worse.  Just last week, my mom and I were both thinking things were starting to settle down, and we were getting more frequent pockets of calm, and then things shifted 4 days ago and we are back to struggling our way through each day.

 

And, yes, coming to this thread has definitely been helpful--it helps to hear that the back and forth is normal and that lots of people have found the long holds helpful (it's truly our only choice for surviving this nightmare--we have tried to make this as gentle as possible on her, but that's obviously an impossible task). 

 

Like you, we have also been house-bound for a really long time.  Sorry for all you have been through with the valium setback, but glad to hear that going back to K was the right thing for you.  Thanks again for your support

[[...]]

MiYu,

With all that you go through, you are still here encouraging others. Have heart! You will be better soon. You will see.

Please remind me of something, I remember that you tried to cross over to Valium but found it was making you sick, (right?) so you went back to klonopin,(right?).

 

So please tell me how come you have put 2mg Valium back in to your taper? Why are you not doing a straight klonopin taper? Did I miss something?

 

Heath

THanks Heath  Can never hear enough times that it will get better one day!

Well, I'll try to keep it short.. I was ok on VAlium for the 1 st year , having crossed over to V from K, which I did because Ashton recomennded it, ( I don't think I wouldl have done that now in retrospect!) I had terrible withdrawals with that crossover. Then I started tapering the V , which was equally horrible even at a slow pace. So last June after only cutting 1/4mg of V in 8 months, my doc persuaded me to try a small cut.... I cut 1/16th mg over a month, and then I couldn't  tolerate the V anymore, every time I took even the smallest amount I got really sick and so sedated I could barely move,, so, again at my docs recommendation, I crossed back to K , he said it was fine to do it in one go , NOT! the wds from switching so suddenly were the worst I've experienced. So within 2 weeks I re-replaced 2 mgs of the Valium for K, and have just left it there. Seems that 2 mgs of V is fine , and I don't have the same reaction as to the larger dose. 

Who knows, maybe if I'd stuck with the V it would have changed , but here I am and I don't plan to make any more med changes!! I'll taper the K first and leave the V til last  , and take my sweet time doing that! 

 

 

So that's it in a nut or more like a coconut shell! 

 

THanks for asking dear Heath

MiYu

[[Al...]]

Miyu,

 

Hi, I really hope the changes you made work for you and with respect to how long it will take,..I am in full agreement it will take as long as it takes.

 

Be well

 

 

ATU🙏

[[...]]

Miyu,

 

Hi, I really hope the changes you made work for you and with respect to how long it will take,..I am in full agreement it will take as long as it takes.

 

Be well

 

 

ATU🙏

d

 

Thanks ATU .... Thank goodness we have each other through this !

Love , MiYu 🙏🏻 💜

[[He...]]

MiYu,

ok so now I understand.

I don’t know what the half life of klonopin is.  Does it stay in your system like the Valium does for a long while? So you don’t have withdrawal between doses of klonopin? Or do you have to dose every few hours with klonopin so you dont get interdose withdrawals?

Any way, I think you are wise to taper just the klonopin and not touch the Valium until the klonopin is out of your system. Tapering one drug  at a time is the wisest thing you can do IMO.

 

Now I can follow you and understand what you are doing. Thanks for taking the time  to explain it to me.

heathcliff

[[Ch...]]

Is everyone really benefiting from long holds?  My work schedule kind of forces me into the long hold group.  I wish I could get off this poison faster, but i can only make 1 cut lermonth so that I can function at work.  Plus, it seems to take me a long time to recover from a cut. 

 

My psych and therapist say I'm making my anxiety worse, that it shouldn't be this bad from the tiny cuts I'm taking.  I'm so confused.  Isn't anxiety part of withdrawal??  They are both telling me no.  I feel like Im.doing something wrong g and that I'll never get off this stuff.  Or if I do, I'm never going to live anxiety free and will end up back on Xanax.  I need help!!  Getting discouraged.

[[Va...]]

Is everyone really benefiting from long holds?  My work schedule kind of forces me into the long hold group.  I wish I could get off this poison faster, but i can only make 1 cut lermonth so that I can function at work.  Plus, it seems to take me a long time to recover from a cut. 

 

My psych and therapist say I'm making my anxiety worse, that it shouldn't be this bad from the tiny cuts I'm taking.  I'm so confused.  Isn't anxiety part of withdrawal??  They are both telling me no.  I feel like Im.doing something wrong g and that I'll never get off this stuff.  Or if I do, I'm never going to live anxiety free and will end up back on Xanax.  I need help!!  Getting discouraged.

I and many others benefited from a long hold. The trick is holding long enough IMO. Many give up after a few months of experIencing the up and down pattern of stabilizing. You can feel ok one day and terrible the next and this will continue until things calm down and fade away but it can take many months. What you describe is very common in withdrawal. While medical advice is helpful sometimes, you are the one who knows how you feel and only you can make the choice of how to taper. Because you are working, I would go as slow as needed, holding whenever needed for as long as needed. You will get off and heal some day so be patient and try to live your life as beat you can.  —V